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I Have Lynch Syndrome —The Evolution From Patient To Advocate

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Article

I embarked on my journey as a patient advocate for individuals with hereditary cancer syndromes after experiencing the underestimated consequences of prophylactic measures meant to prevent gynecological cancers.

cartoon drawing of cancer survivor and blogger, Georgia Hurst

My initial foray into advocacy was born out of the need to shed light on the often-overlooked drawbacks of an oophorectomy I underwent at a young age. This procedure, strongly recommended in order to prevent ovarian cancer, inadvertently led to adverse health consequences. Little did I know that my writing about this experience would transform into a broader advocacy effort.

Feeling isolated and alone in my journey, I created a blog to connect with others who might be in a similar situation. To my surprise, I discovered a vast community of women silently struggling with the same issues, who cheered me on to be their voice and highlight the cascading effects of bilateral salpingo-oophorectomy.

My diagnosis of Lynch syndrome, a genetic condition predisposing individuals to certain types of cancer, including colorectal and endometrial, was devastating. I soon realized that knowledge alone is insufficient; actionable knowledge truly empowers. To navigate this complex medical landscape, I embarked on a journey of self-education, immersing myself in books, scientific journals and online resources to gain a deeper understanding of my genetic nemesis. This knowledge became the foundation of my advocacy efforts, encompassing the medical, emotional and practical aspects of the condition.

I broadened my perspective by learning about genetic diseases that affect children, some of which have visible physical manifestations. This newfound understanding was eye-opening and reinforced my commitment to advocacy. It also gave me tremendous perspective when thinking about Lynch syndrome.

Through my writing and online engagement, I found a supportive community of individuals who shared similar experiences. Online support groups provided a safe space to share stories, exchange information, and find emotional support. Building this network of fellow advocates and patients became an empowering experience.

As I delved deeper into my research, I realized the importance of becoming my advocate within the healthcare system. I became more assertive, asking questions, seeking second opinions and ensuring I received the best care. Open communication with my healthcare team and active participation in my care became essential.

Back when I started writing about Lynch syndrome twelve years ago, there was a lack of information about the syndrome and the consequences of undergoing a bilateral salpingo-oophorectomy online. I began by sharing my story with friends and family, gradually expanding my reach through social media and public speaking engagements. I humanized the condition by sharing my personal account, making it more relatable to others.

Building strong relationships with healthcare professionals specializing in Lynch syndrome has been pivotal to my advocacy. Collaborating with doctors, genetic counselors and other experts has informed me about the latest research and treatment options. Their expertise has been instrumental in guiding my advocacy efforts.

Advocacy often extends to participating in research initiatives. I have actively engaged in research studies related to Lynch syndrome, contributing to scientific knowledge that benefits future generations and empowers me as an advocate.

Advocacy can also influence policy change. Joining advocacy organizations or working with local lawmakers can help shape healthcare policies, improving access to genetic testing, screenings and preventive measures for at-risk individuals.
Sharing resources and information is fundamental to advocacy.

Create a platform, whether a blog, website, or social media presence, to disseminate valuable resources, updates and support to the Lynch syndrome community and beyond. As times change, adapting your advocacy efforts to reach a wider audience is essential. Just be sure that the information you are provided to your audience is accurate.

My journey from being a Lynch syndrome patient to becoming an advocate has been both remarkable and overwhelming. It began with challenges but evolved into a journey of empowerment, resilience and hope. Advocacy isn't limited to those with Lynch syndrome; anyone can follow these steps to impact the lives of individuals facing health challenges positively.

Whether you're dealing with a genetic condition, a chronic illness, or a health-related issue, these steps can serve as a blueprint for your advocacy journey. Remember that advocacy is an ongoing commitment requiring continuous learning and adaptation. Your story, voice and actions can make a profound difference in the lives of countless individuals who need support and inspiration

Understand your diagnosis, educate yourself, connect with communities, advocate for yourself, raise awareness, know your rights and collaborate.

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